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All beds are empty, except this one. The 24 year old woman
who occupies it hardly moves, only her chest goes up and down in the
slow rhythm of a sleeper's breath. Her mother sits beside the bed,
hands in her lap. Her eyes go back and forth between her child and
the health worker doing his round. It is early afternoon and the sun
shining through the open windows makes it an even more peaceful
picture. There is no sign to give away the raging battle going on
here. This young woman is on the brink of death.
 "This morning, only a few hours ago, she was
lively like the others," says the health worker. "All of a
sudden, she had severe seizures and then slid into a coma. There is
not much we can do for the moment, apart from trying to pull her
through with a sugar solution. We'll have to wait and
see."
The hospital is in
Omugo, a small town in the far north-west of Uganda, an hour's drive
from the airstrip in Arua. In this area, two battles are fought
simultaneously. There is the battle of man against man; the Lord's
Resistance Army or LRA, have seemingly no political agenda but
manage to destabilise the district, causing many Ugandans to flee
across the border into the south of Sudan. Many of them returned,
because they found themselves in the midst of an even fiercer war on
the other side of the border. And there is the battle of man against
nature, more specifically the tsetse fly, the sole transmitter of
trypanosomiasis, a disease better known as sleeping sickness.
The fly is hardly an
impressive opponent. It is only active during daytime, can only
travel short distances and is easily lured into a trap made of cloth
since it is fond of dark colours and blue. Yet many millions of
Africans have already died from the trypanosome parasite introduced
into their blood stream by the flies.
The tsetse fly is
the sole transmitter of trypanosomiasis, a disease better
known as
sleeping sickness. |
Andrew
Schechtman, the MSF doctor in charge of the sleeping sickness
projects in Arua district, explains that there are two stages to the
disease. "The first months after the infection from the tsetse
fly bite, the parasite is multiplying in the blood and the lymph
fluids. During this stage, the patients often have headaches, itchy
skin and body and joint pains. After they have had this condition
for a few months, the parasite will make its way into the central
nervous system around the brain and multiply there. Then the
patients will have worsening headaches and more changes in their
mental status. They'll become confused, disoriented, have
hallucinations, become combative. Their sleep-wake cycle changes, so
that they will be sleeping throughout the day and awake all night.
That is how the disease got its name. It is not uncommon to see a
patient actually fall asleep as he is bringing a spoon with food up
to his mouth."
The tsetse
fly is a very common insect in Africa and so is the disease it
transmits. Among the worst areas in terms of incidence of
trypanosomiasis are areas of Angola, former Zaire and the region
around the border between Sudan and Uganda. The devastating effects
of the disease have been known for a long time. Dr Albert Schweitzer
recorded early this century: "An officer told me that he once
visited a village on the upper Ogowe which had 2,000 inhabitants. On
passing it again two years later he could only count 500; the rest
had died meanwhile from sleeping sickness."
In 1986, the Ugandan Ministry of Health called
upon MSF to help control the disease. Their sleeping sickness
control programme had run out of resources and expertise. The
situation in the north of the country was only getting worse. As the
programme's medical coordinator Dr Maiso explains, "we had
Ugandans who had fled to Sudan coming back to Uganda. They found a
big population of tsetse flies carrying the disease when they were
settling in the districts of Adjumani, Mojo and Arua". Ever
since, MSF doctors, nurses, laboratory technicians and logisticians
have been fighting sleeping sickness in this part of Africa, side by
side with Ugandan health workers.
On the grounds around the
sleeping sickness wards of Omugo hospital, people sit in the sun and
chat. Most patients can move around outdoors while they are here for
treatment, since they have no severe symptoms. There is, however,
one man in his late twenties lying on a blanket on the ground with
his hands and feet tied. He seems to be having an ongoing debate
with himself, rolling over from his left side to his right and back
again. His sister sits beside him, but his argument is not with her.
He just talks, his voice going up and down as if it were a chant.
The most striking thing about it is that he is speaking English,
fluently and without a trace of an accent. "I don't know where he
got his education, but he must be a remarkably intelligent man,"
says Andrew. He is in the late stage of sleeping sickness. The cords
around his hands and feet are there to protect him from doing any
harm to himself or to others. This is how his family brought him to
the hospital, he had become too aggressive to have at home any
longer.
The next morning,
when Andrew does his round, all the patients and their carers -
family members who watch over them and feed them - have gathered in
the wards. The young woman still seems to be in coma, but she
responds a bit to her name and to the voice of her mother. A good
sign, says the Ugandan health worker who was at her bed yesterday.
Andrew takes his time to discuss each patient with the Ugandan
staff. He asks them for their assessment, explains his ideas and
discusses the treatment.
After his round, Andrew talks about why not everybody will
survive. "The medications that we use have been around for a long
time", he says. "But they are far from perfect. For the early
stage we use a drug called pentamidine, which is well known in AIDS
treatment now. It cures about 95 per cent of the people, with very
few side effects. Unfortunately, we don't find many of the patients
until they have gone into the second stage and they actually seek us
out for treatment. The drug we use to treat that is called
Melarsoprol, or Arsobal. It is a drug derived from arsenic. It has
been around for fifty years and has a lot of toxicity. Many patients
will have severe inflammations in the veins, swellings… very
painful. About 5 per cent of patients who have this severe reaction,
Arsobal encephalopathy, will go into a coma or have constant
seizures. Of these people 50 per cent will die and 50 per cent will
recover."
Access to
essential drugs
Without
treatment, every person who has sleeping sickness would die. That
does not take away the irony of some patients dying from the
treatment instead of the disease. Even more ironic is the fact that
there is an alternative. That is, in theory. Andrew explains,
"right now, there is another medicine called DFMO, or
Eflornitine, which is a drug that was developed in investigations
for cancer therapy. It was found to be very effective for the second
stage of sleeping sickness. It has much fewer side effects and
essentially, there is no mortality when treating this disease with
it. Unfortunately, it is very expensive; a treatment course for a
patient would end up costing about 800 US dollars, which is a cost
far out of reach of the developing world. And also unfortunately,
this drug has not been found to be effective for any use other than
sleeping sickness. There is no market for this drug, and the drug
companies are simply not making it any
more".
A lot depends,
therefore, on getting patients in before they are at the most severe
stage of sleeping sickness. An MSF mobile team visits all parishes
in Arua district, setting up a table under a tree and conducting
blood screening tests for everybody who shows up. And a lot of
people attend. The team manages to do up to 700 tests a day. People
are familiar with the disease, everybody knows someone who has died
from it. The entire population in the district is screened because
the lower the number of people carrying the parasite, the less
chance tsetse flies have of picking up and transmitting the disease.
When someone tests positive,
a second test is done. Then the patient is asked to come to the
hospital as soon as possible, which in almost all cases means
getting into the MSF car right away. Once in the hospital, more
tests follow, including a lumbar puncture. The aim is to make
absolutely sure whether or not the patient carries the parasite.
Resources are limited, treatment is expensive and can be dangerous,
so the medical team wants to be absolutely sure that they treat the
right people.
A dangerous
cure
The results are
impressive: after years of hard work, fewer than one in a hundred
people in Arua district have sleeping sickness. Meanwhile, Andrew
cannot hide his frustration. "The main push of this programme is
to identify these cases of sleeping sickness. It is frustrating that
even when we find them often we are not able to cure them because
the drugs available are so limited", he says. "When people
relapse after a treatment of Arsobal, we don't have this other drug
available to treat them. We are put in a position where we have to
say: I'm sorry, you have to go home and wait and if over the next
few weeks or months we come by something to offer you, we will call
you back and treat you. Most of these patients will go home and
eventually die from the disease. The first patient I had to send
home was a nine year old girl who had been treated four times
already with Arsobal. Our statistics had shown that treating a fifth
time would not have any benefit and would result in all the same
toxic reactions. As much as I wanted to treat this girl, I had to
tell her to go home and wait and hope to hear from us."
Early in the afternoon, the
24-year-old woman dies, killed by what should have been the cure. In
the grounds around the wards, normally a lively place, the sound of
the patients sobbing is punctuated by the desolate cries of the
mother. Some of the hospital staff carry the body, covered in a
blanket, into an MSF car. A nurse accompanies the mother on the
drive back to the family's home village. It is the first death from
sleeping sickness in months in the hospital. Through their tears,
the other patients pay their respects. Only one man speaks, with
hands and legs tied, to nobody in particular, probably unaware of
his condition, certainly ignorant of his fate.
It takes a while before Andrew is able to speak
about what keeps him going. "At the end of the day, the rewards
are certainly more numerous than the difficulties. This town has no
doctor, the Ugandan government does not have a doctor that they can
have working in this town. They cannot afford to treat sleeping
sickness without help from MSF. These people would all be dying if
I, or someone in my place, were not here to help. Everybody we are
curing is someone who would have died otherwise. And that is very
rewarding."
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